Portraits of Life, Love & Legacy Through Pediatric Palliative Care

♪ ♪ ♪ ♪ IN THIS FILM,THE STORY OF PEDIATRICPALLIATIVE CAREWILL BE TOLD BY SEVEN FAMILIES:THE BISHOPS,THE BEATTYS,THE PEREZES,THE WISNIEWSKIS,THE RABERS,THE HICKMANS,AND HOPFES.THESE FAMILIESREPRESENT SOME OFTHE DIVERSITY OFPALLIATIVE CARE.CHILDREN OF DIFFERENT AGES,DIFFERENT DIAGNOSESAND CIRCUMSTANCES.THEY OPEN THEIR HEARTS TO SHARETHEIR REALITIES OF THEIR LIVES,THEIR STRUGGLES,AND THEIR JOYS.PERSPECTIVES ARE ALSOSHARED BY TEAM MEMBERS OFTHE HASLINGER FAMILY PEDIATRICPALLIATIVE CARE CENTERAT AKRON CHILDREN’S HOSPITAL.CAREGIVERS OF MANYDIFFERENT DISCIPLINESDISCUSS THEIR RELATIONSHIPSWITH THE SEVEN FAMILIESAND THE ROLES THEY PLAYIN THEIR CARE. IF YOU HAD TO DISTILL IT INTO ONE SENTENCE, PEDIATRIC PALLIATIVE CARE IS REALLY ABOUT AMELIORATING SUFFERING. THEY’RE LIKE A WARM BLANKET AROUND YOUR BABY. NO MATTER WHAT YOUR BABY IS GOING THROUGH, THEY ARE, THEY ARE THERE SURROUNDING THAT CHILD AND EVERY CHILD IS TREATED
LIKE AN INDIVIDUAL. WE SEE CHILDREN WHO HAVE A LOT OF NEEDS IN THEIR LIFE THAT OTHER CHILDREN AREN’T GOING TO HAVE, SO TO PALLIATE FOR THEM MEANS SOMETHING
DIFFERENT FOR EVERY CHILD. IT’S TO EASE THE BURDENS, AND
THAT’S WHAT WE’RE THERE FOR. WE’RE NOT ONLY THERE TO
EASE THE MEDICAL BURDENS; WE’RE THERE TO EASE THE SOCIAL BURDENS, THE FINANCIAL BURDENS, THE EMOTIONAL AND SPIRITUAL BURDENS. WE FREQUENTLY LIKEN WHAT WE DO TO A PALETTE OF CARE. (Sarah Friebert, MD)
A PALETTE, AN ARTIST’S PALETTE WITH ALL OF ITS DIFFERENT
COLORS ON IT REALLY REPRESENTS ALL OF
THE DIFFERENT FACETS OR DISCIPLINES OR
SUBSPECIALTIES THAT WE BRING TOGETHER
TO THE CARE OF A CHILD WITH A LIFE-THREATENING
CONDITION. EVERY FAMILY USES DIFFERENT
PARTS OF OUR TEAM DIFFERENTLY, AND THEY MAKE
THEIR OWN PICTURE. SO THEY MIGHT USE A LOT
OF THE MEDICAL PIECE AND MAYBE JUST A LITTLE BIT
OF THE SPIRITUAL PIECE. OR THEY MAY USE A LOT OF
THE SOCIAL WORKER PIECE AND THE PSYCHOSOCIAL TEAM AND JUST A LITTLE BIT
OF THE MEDICAL TEAM. AND SO EACH PICTURE IS
DIFFERENT AND THAT’S, WE’RE ALL HERE FOR THEM
ON A TRAY AND THEY GET TO PICK
WHAT THEY WANT. PEDIATRIC PALLIATIVE CAREBEGINS AT THE TIMEOF INITIAL DIAGNOSISOF A LIFE-THREATENINGOR SERIOUS ILLNESS,AND CONTINUESTHROUGHOUT THE JOURNEYTO CURE OR TO DEATH ANDBEREAVEMENT,IF THAT OCCURS.PALLIATIVE CARE INVOLVESBOTH COMFORT-ORIENTEDAND CARE-DIRECTED THERAPY,IN WHICH PROVIDERSPARTNER WITH FAMILIESTO HELP THEM NAVIGATEA COMPLEX HEALTH CARESYSTEM,AND MAKE THE BESTPOSSIBLE DECISIONSABOUT THEIR CHILDREN’S CARE. PALLIATIVE CARE IS
MY GO TO TEAM. YOU KNOW, YOU’RE NOT
JUST A NUMBER; YOU MEAN SOMETHING TO THEM. THEY’RE CARING FOR
OUR CHILD AND FOR US AND HELPING US LIVE LIFE
EVERY DAY THE BEST THAT WE CAN. JUST WHEN YOU THINK THAT
THEY’VE DONE EVERYTHING THAT THEY COULD DO AND THAT THEY HAVE
SERVICED YOU IN EVERY WAY, THEY GO ABOVE AND BEYOND AND DO SOMETHING THAT
YOU JUST CAN’T BELIEVE. PALLIATIVE CARE IS
A DISCIPLINE, IT’S A MEDICAL SPECIALTY. IT IS BOARD CERTIFIED. NURSING HAS SPECIAL
CERTIFICATIONS, DOCS HAVE SPECIAL TESTS
THEY HAVE TO TAKE AND NOW HAVE TO
HAVE FELLOWSHIPS, SO IT IS AS A SUBSPECIALTY
AS PULMONARY. BUT WHAT WE DO IS SO INTIMATETHAT FAMILIES HAVE TOLET US INTO PIECES AND PARTSOF THEIR LIVESTHAT NOBODY BUT OTHERFAMILY MEMBERS GET TO SEE, AND THAT SACRED
RELATIONSHIP AND AGREEMENT THAT WE MAKE WITH THIS FAMILY
THAT WE ARE GOING TO BE YOUR PALLIATIVE CARE
PROFESSIONAL AND WALK THIS JOURNEY WITH YOU IS
UNIQUE IN MEDICINE. MORGAN BISHOP WAS BORN INTOA LOVING FAMILY.HER FATHER KENAN,HER MOTHER DENICAAND HER BIG SISTER SKYLARDIDN’T SUSPECT ANYTHING WASWRONG WHEN MORGAN WAS BORNA CALM, PEACEFUL BABY.GENETIC AND NEUROMUSCULARTESTING BROUGHT BACKA DIAGNOSIS OF SPINALMUSCULAR ATROPHY TYPE I,A FATAL ILLNESS.CHILDREN WITH SMA TYPE I HAVEGENERALIZED MUSCLE WEAKNESS.MOST IMPORTANTLY,THEY HAVE TROUBLE EATING ANDBREATHING ON THEIR OWN.AFTER MISTAKENLY RECEIVINGNORMAL TEST RESULTSAND BREATHING A GREATSIGH OF RELIEF,HER FAMILY WASDEVASTATED TO LEARNTHAT INDEED MORGAN HADSMA TYPE I,WOULD NEVER WALK OR TALK,AND MIGHT NOT EVEN LIVE‘TIL HER SECOND BIRTHDAY.PALLIATIVE CARE WAS CONSULTEDDURING THE HOSPITAL VISITIN WHICH SHE WAS DIAGNOSED TOPROVIDE SUPPORT TO THE FAMILYIN THE WAKE OF THE DIAGNOSISAND TO ASSIST THE FAMILY ASTHEY BEGAN THEIR JOURNEYTHROUGH THE HEALTHCARE SYSTEM. MY WORLD WAS SHATTERED. AND SO… I’M IN A HOSPITAL ROOM, AND, I’M JUST SO ANGRY, AND JUST CRYING AND
YELLING AND SCREAMING, HOW COULD THIS HAPPEN? AND AT THAT POINT I DIDN’T WANT TO
HEAR FROM ANYBODY. I WAS DONE, I WAS DONE
WITH THE HOSPITAL, I WAS DONE WITH EVERYBODY. IT WAS JUST, YOU DON’T KNOW
WHAT YOU’RE DOING. I THINK THAT IT’S VERY DIFFICULT FOR THAT FIRST DOCTOR OR FIRST NURSE WHO HAS TO TELL A FAMILY A DIAGNOSIS. WE HAVE TO FIRST OF ALL
JUST RECOGNIZE THAT, SO IF YOU’RE THE FIRST PERSON, IT’S LIKE, OKAY,
WHAT AM I GOING TO SAY? I’M GOING TO BE CAREFUL
ABOUT WHAT I SAY AND A LOT OF TIMES
IT’S GOING TO BE JUST A BEGINNING PART
OF THE STORY. THE COMMUNICATION ON
MY PART WAS CLOSED. I WASN’T REALLY TRYING
TO TALK WITH ANYONE, AND THE NICEST WOMAN
CAME INTO OUR ROOM, AND THIS WAS DR. FRIEBERT. I THINK SOMETIMES WE HAVE
THE OPPORTUNITY TO MEET FAMILIES WHEN THEY ARE
IN THE THROES OF THEIR WORST NIGHTMARE, AND OFTENTIMES THAT’S
ACCOMPANIED BY ANGER FOR VARIOUS REASONS, AND ONE OF THE THINGS THAT
WE REALLY STRIVE TO DO IS TO BE PRESENT WITH FAMILIES AND FOR THEM TO
FEEL SAFE TO FEEL THAT AND EXPRESS IT
WITHOUT JUDGMENT. AND I SAID, PALLIATIVE CARE? WHAT IS THIS, BABY HOSPICE? AND YOU KNOW, WHEN YOU
THINK HOSPICE, YOU THINK MORPHINE DEATH. PEOPLE MESH HOSPICE AND
PALLIATIVE CARE AND DON’T SEE THAT DIVISION
BETWEEN HOSPICE CARE, WHICH IS INCREDIBLY IMPORTANT, AND NOT HOSPICE
PALLIATIVE CARE. SO I THINK THAT’S REALLY
THE NUMBER ONE MYTH THAT WE FACE IS THAT WHEN
YOU HEAR THE WORD PALLIATIVE IT’S A SECRET CODE WORD
FOR HOSPICE, WHICH IS A SECRET CODE WORD
FOR LOSS OF HOPE, GIVING UP, ABANDONING – ALL THOSE SORTS OF
NEGATIVE THINGS. AND DR. FRIEBERT AND HER TEAM, THEY WERE ABLE TO SKILLFULLY,
MASTERFULLY… YEP. WORK AROUND
OUR ATTITUDES AND OUR PRECONCEIVED
NOTIONS TO BECOME THE BEST,
BEST FRIENDS, BEST ADVOCATES THAT WE COULD HAVE
EVER ASKED FOR. TYLER BEATTY HADA NORMAL BIRTHAND LIVED THE LIFEOF A TYPICAL CHILDWITH HIS FATHER CHRISAND HIS MOTHER CARA FORHIS FIRST THREE YEARS,UNTIL THEY LEARNED HE HADA TUMOR IN HIS HEADTHE SIZE OF A SOFTBALL.HE WOULD HAVE DIEDWITHOUT SURGERY,BUT DUE TO THE TUMOR SIZEAND LOCATION IN THE BRAIN,TYLER WOULD NEVER BE THE SAME.DAMAGE TO THE BRAIN WASINEVITABLE, AND THERE WOULD BENUMEROUS SIDE EFFECTSFROM THE SURGERY,PRIMARILY ARISING FROMDAMAGE TO THE HYPOTHALAMUS,THE PART OF THE BRAIN THATCONTROLS BODY TEMPERATURE,HUNGER, THIRST, FATIGUE,AND SLEEP CYCLES.PALLIATIVE CARE WAS CONSULTEDSOON AFTER SURGERYTO PROVIDE SUPPORT, ASSIST WITHPAIN AND SYMPTOM MANAGEMENT,AND TO COORDINATE HIS CARE. WE CAME IN THE HOSPITAL WITH
OUR THREE-AND-A-HALF-YEAR-OLD NORMAL, TYPICAL CHILD, AND
WE’RE LEAVING THE HOSPITAL INTO THIS WORLD OF COMPLETELY
UNKNOWN THAT, WE WERE SO LOST AS PARENTS, BUT JUST AS, WE WERE SO OVERWHELMED WE DIDN’T KNOW WHAT THE FUTURE WAS GOING TO BRING, AS HE COULDN’T EVEN
HOLD HIS HEAD UP. AND SO HERE YOU HAVE YOUR THREE-AND-A-HALF-YEAR-OLD
CHILD WHO WAS RUNNING AND LAUGHING AND PLAYING AND NOW SIX MONTHS LATER
ALMOST LIKE A BABY AGAIN. WHEN TYLER WAS FIRST DIAGNOSED
I WAS JUST VERY NUMB. I THINK EVERYBODY WAS IN A LITTLE BIT
OF DENIAL ABOUT, OH, HE’S GOING TO BE FINE. THEY’LL GET THE TUMOR,
HE’LL BE FINE. AND NOT REALIZING THAT IT’S JUST A COMPLETELY
DIFFERENT EXPERIENCE AFTER THAT DAY, AND YOU HAVE, LIKE
IN MY MIND, WE HAVE JUNE 21ST AND THEN
JUNE 22ND OF ’04. IT IS A GRIEVING PROCESS BECAUSE WHEN YOU
HAVE SOMETHING THAT CATASTROPHIC
HAPPEN TO YOU, YOU GRIEVE FOR THE CHILD AND THE THINGS THAT
WILL NEVER HAPPEN. I KNOW FOR ME THAT’S,
AS A MOM, I THINK THAT’S WHAT’S
BEEN SO HARD IS KNOWING TYLER WON’T GO TO COLLEGE,
AND HE WON’T GET MARRIED, AND HE WON’T HAVE KIDS, AND DEALING WITH THAT IS
HARD, BUT THEY HELP. YOU KNOW, HAVING
DR. GERAK ON THE TEAM HAS HELPED IMMENSELY
TO JUST BE ABLE TO WALK THROUGH THIS AND
TALK THROUGH IT, AND SOMETIMES JUST TO HAVE A SAFE PLACE
TO GO AND SAY, THIS JUST REALLY SUCKS
AND I HATE IT. I FIND WITH A LOT OF FAMILIES, YOU KNOW, BUT CARA’S FAMILY IS INDICATIVE OF, THEY CAN BE IN SUSPENDED ANIMATION FOR A LONG TIME. YOU KNOW, SOMETIMES IT’S A SHORT TIME, COUPLE DAYS, OR COUPLE WEEKS DURING THE MIDDLE
OF THE TRAUMA, OR AS THE CHILDREN ARE HEALING,
AND SOMETIMES FOR YEARS, AND I THINK IT’S VERY HARD
FOR FAMILIES AND PATIENTS TO LIVE IN THE PRESENT,
AND LIVE LIFE FULLY WHILE MAKING SENSE
OUT OF THE PAST AND KNOWING THAT THE FUTURE MAY
OR MAY NOT BE GUARANTEED. (Cara) THEY ALWAYS ASK, LIKE, WHEN WESEE DR. FRIEBERT OR DR. CATHY,HOW ARE YOU, TYLER?AND HOW ARE YOU GUYS?AND ARE YOU THINKINGABOUT GOING ON VACATIONAS A FAMILY THIS SUMMER?AND THERE ISN’T A TIMETHAT DOESN’T GO BY WHERE THEY DON’T LOOK AT US AS
A WHOLE AND MAKE SURE THAT EACH ONE OF US IS OKAY,
NOT JUST TYLER, BECAUSE THEY SEE US AS
A THREE…PUZZLE ALMOST, LIKE THERE’S TYLER, CHRIS
AND CARA, AND IN ORDER TO MAKE EVERYBODY OKAY,
WE ALL HAVE TO BE OKAY. IT’S ABOUT
FAMILY-CENTERED CARE. IT’S NOT JUST ABOUT THE PATIENT
AND THE PARENT, IT’S ABOUT THE SIBLINGS,
IT’S ABOUT THE GRANDPARENTS, IT’S ABOUT THE AUNTSAND UNCLES,IT’S ABOUT THE COMMUNITYTHAT THE CHILD LIVES IN,SO WHEN I SAY FAMILY-CENTEREDI MEAN THE ENTIRE FAMILY,INCLUDING THE PETS. THERE’S A FINE BALANCE BETWEEN
RECOGNIZING THAT PARENTS ARE THEIR CHILDREN’S
BEST ADVOCATES AND KNOW THEIR CHILDREN BEST AND PUTTING TOO MUCH
RESPONSIBILITY ON THEM THEREFORE,
TO MAKE DECISIONS. SO SOMEWHERE IN THE MIDDLE
IS PARTNERSHIP. KATHARINE PEREZ WAS WELCOMEDINTO THE WORLDBY HER MOTHER VIANETT,HER FATHER SALVADOR,AND HER BIG BROTHERSCARLOS AND ANTHONY.KATHARINE WAS BORN WITHA BRAIN MALFORMATIONRESULTING IN A SEVERESEIZURE DISORDER.SHE IS DEVELOPMENTALLYDELAYEDAND HAS SERIOUSMEDICAL PROBLEMS.BECAUSE SHE CANNOT EAT ORALLY,SHE HAS A FEEDING TUBE.DUE TO HER CHRONICRESPIRATORY FAILURE,SHE HAS A TRACHEOSTOMYAND A HOME VENTILATOR.IN SPITE OF ALL THESESPECIAL NEEDS,HER FAMILY IS NOW,AND HAS ALWAYS BEEN,COMMITTED TO CARINGFOR HER AT HOME.PALLIATIVE CARE WAS CONSULTEDSOON AFTER KATHARINE’S BIRTHWHEN IT WAS DETERMINEDKATHERINE’S BRAIN DISORDERAND SEIZURES WOULDBE DIFFICULT TO MANAGE.THEY WERE CONSULTEDTO PROVIDE SUPPORT,BUT WERE ALSO ASKED TO HELPDETERMINE THE FAMILY’S HOPESAND GOALS FOR KATHARINE,AND TO PREPARE THEMFOR DIFFICULT DECISIONSTHAT WERE FORTHCOMING. THEY SPOKE SOME ENGLISH BUT WE REALLY HAD A CONCERN ABOUT THE LANGUAGE BARRIER BEING A HINDRANCE TO FULL UNDERSTANDING, SO THERE WERE SEVERAL
MEETINGS WITH AN INTERPRETER JUST TO MAKE SURE THAT THEY
REALLY UNDERSTOOD WELL WHERE THINGS WERE
WITH HER CONDITION AND WHAT DID THAT MEAN
IN THE BIGGER PICTURE AND LONGER-TERM FOR
HER QUALITY OF LIFE. [speaking Spanish] (Marlene Hardy-Gomez) IT WAS SO CLEAR TO ME
WHEN I HEARD FROM THEM THAT WHATEVER THEY NEEDED TO DO
TO CARE FOR THEIR DAUGHTER IT WAS VERY MUCH THAT’S
WHAT THEY WERE GOING TO DO NO MATTER HOW HARD IT WAS AND SO FROM THERE ON IT WAS,
OKAY, WHAT DO WE NEED TO DO TO HELP AND SUPPORT THEM
THE BEST WAY THAT WE CAN AND MAKE THAT HAPPEN? BECAUSE THAT WAS THE RIGHT
DECISION FOR THEM. KASSIE RABER IS ANELEVEN-YEAR-OLD GIRLWHO LIVES AT HOMEWITH HER MOTHER TINAAND HER TWO BROTHERSDYLAN AND JASON.KASSIE WAS DIAGNOSEDAT BIRTH WITHCONGENITAL CYTOMEGALOVIRUS.IN OTHER WORDS SHE HAD BEENINFECTED WITH THIS VIRUSPRIOR TO HER BIRTH.AS A RESULT SHE HASCEREBRAL PALSY,INTELLECTUAL DISABILITYAND HYDROCEPHALUS(THAT’S INCREASEDFLUID IN HER BRAIN).THE PALLIATIVE CARE TEAMMET KASSIE WHEN SHEWAS THREE YEARS OLD,AFTER MULTIPLE ADMISSIONSFOR PNEUMONIA ANDA PROLONGED STAY INTHE INTENSIVE CARE UNIT.AT THAT TIME HER FAMILY FELTSTRONGLY THAT THEY DID NOTWANT HER TO HAVE A TRACHEOSTOMYOR A VENTILATOR.BUT WHEN KASSIE’S CHRONICRESPIRATORY FAILURE BECAMEINCREASINGLY LIFE-THREATENINGHER FAMILY CHANGED THEIR MINDSAND OPTED FOR THE TRACHEOTOMYAND VENTILATOR. KASSIE HAS A LOT OF PERSONALITY ONCE YOU GET TO KNOW HER. SHE’S NOT EASY TO UNDERSTAND IF YOU’RE A STRANGER
COMING OFF THE STREET, BUT SHE IS ORNERY
ONCE YOU GET TO KNOW HER. SHE IS A SPOILED LITTLE
PRINCESS. WE HAVE TWENTY HOURS OF NURSING
IN OUR HOUSE A DAY AND WE HAVE NO PRIVATE LIFE
BUT THAT’S JUST HOW IT IS. A TYPICAL DAY OFCARING FOR KASSIE,SHE HAS A LOT OF TREATMENTS.SHE GETS VEST THERAPY,SHE GETS A LOT OF MEDS.BASICALLY EVERY TWO HOURSTHERE’S A MEDICINETO BE GIVEN TO HER.SHE GETS SUCTIONED A LOTTHROUGH HER TRACH.SHE GETS TWO PAINS EVERYFOUR HOURS.SHE’S A VERY BUSY LITTLE GIRL.KASSIE IS NOT HOUSEBOUND.IF WE WANT TO TAKEA FAMILY OUTING,WE TAKE CASSIE WITH US.KASSIE IS VERY MUCHA PART OF OUR FAMILY.WE TAKE HEREVERYWHERE WITH US.IF WE GO TO THE ZOOKASSIE GOES TO THE ZOO.WE WENT TO MYRTLE BEACH.KASSIE WENT TO MYRTLE BEACHWITH US,AND WE DIDN’T TAKE A NURSE.KASSIE WENT WITH US.IT’S JUST OUR FAMILY.THE BAGGAGE THAT COMESWITH KASSIE,USUALLY WE END UP WITH ABOUTTWO OR THREE DIAPER BAGS,A VENTILATOR,A SUCTION MACHINE.IF IT’S A DAY OUTING,THAT’S OUR DAY OUTING.IF WE’RE TAKING VACATION,WE END UP RENTING A U-HAUL. SHE’S A BIG PART OF OUR FAMILY
AND I THINK IF ANYTHING EVER HAPPENED TO HER
THERE’D BE A LOT MISSING. ADDISON WISNIEWSKI ISAN ELEVEN-YEAR-OLD GIRLWITH A SPARKLING SMILE ANDPERSONALITY TO MATCH.SHE LIVES AT HOME WITHHER MOTHER ANDREA,HER FATHER JOHN, AND HEREIGHT-YEAR-OLD SISTER HARPER.SHE WAS BORN WITH A GENETICBONE DISORDER CALLEDOSTEOGENESIS IMPERFECTATYPE IV, OR OI,WHICH IS SOMETIMES REFERREDTO AS BRITTLE BONE DISEASE.OI TYPICALLY RESULTS INBONES FRACTURING EASILY,BONE DEFORMITY,SHORT STATURE,AND THE POSSIBILITY OFEARLY HEARING LOSS.ALTHOUGH ADDISON WASDIAGNOSED AT AN EARLY AGE,THE PALLIATIVE CARE TEAM FIRSTMET THE FAMILY WHEN ADDISON WASNINE YEARS OLD TO HELPWITH PAIN MANAGEMENTAS A RESULT OF HERMULTIPLE FRACTURES. EVERY DAY OF MY LIFE I HAVE
A LOT OF PAIN AND I KIND OF JUST HAVE TO DEAL WITH IT BECAUSE REALLY, LIKE, I HAVE TO GO ON AND HAVE A GREAT DAY. I BREAK REALLY EASILY, SO IF I GET A LITTLE COUGH I CAN BREAK MY RIBS. IF I SNEEZE TOO HARD I’LL BREAK MY RIBS. SO IF I HAVE A BROKEN BONEIT’S HARD A LOT OF TIMESBECAUSE I’M IN A LOT OF PAIN. SOMETIMES IF WE’RE
PLAYING SOMETHING, OR WE’RE DOING
SOMETHING TOGETHER AND SHE’S LIKE, HER BONES,LIKE HER, OR SHE’S NOT FEELINGWELL, SHE HAS TO GO IN AND THAT JUST KIND OF
MAKES IT HARDER. THE THING WITH ADDIE
IS THAT THERE’S, ANY MOMENT ANYTHING CAN
CHANGE AT ANY GIVEN MOMENT. THE DAY COULD BE GOING REALLYWELL AND THEN ALL OF A SUDDENONE LITTLE WRONG MOVEMENTAND SHE HAS A FRACTURE. I’VE BROKEN PROBABLY
OVER A HUNDRED BONES AND UHM, I’VE BROKEN MY FEMURS,
I BREAK RIBS A LOT. I’VE BROKEN ARMS,
ANKLES, FEET- – PRETTY MUCH ANYTHING YOU
CAN THINK OF, I’VE BROKEN. MY MOM’S FRIEND SUGGESTED
PALLIATIVE CARE BECAUSE SHE THOUGHT THAT THEY
COULD REALLY HELP ME WITH MY EVERYDAY BONE PAIN. AND WHEN I FIRST METPALLIATIVE CARE,I TALKED TO DR. HIRSH, AND THEY’VE BEEN HELPING ME
WITH MY PAIN EVER SINCE THEN. RECENTLY ADDIE’S BEEN
DEALING WITH A LOT OF PAIN, MORE THAN HER NORMAL, SO THEY ASSISTED US WITH SOME
MEDICATIONS THAT ARE REALLY HELPING HER LIVE A MORE
NORMAL LIFE. THIS IS THE BEST
SHE’S FELT IN YEARS. WE’RE ALL JUST REALLY
THRILLED, HUH, ADD? BECAUSE SHE’S BEEN REALLY, REALLY NOT
FEELING GOOD. COULDN’T EVEN GO TO SCHOOL, AND SO
THE LAST COUPLE OF… YOU’RE NOT SUPPOSED
TO CRY. I’M SORRY. (Sarah Friebert, MD)PAIN ANDSYMPTOM MANAGEMENTARE CORE TO PEDIATRICPALLIATIVE CARE ANDPALLIATIVE CARE IN GENERAL.IF YOU HAVE A CHILDWHO’S IN PAIN OR SUFFERING FROM
ANOTHER SYMPTOM, ALL THE OTHER DIMENSIONS OF
CARE ARE SECONDARY TO THAT. WHAT DOES SHE DO TO, LIKE,
EXHIBIT PAIN? HOW DOES SHE SHOW YOU
SHE’S IN PAIN? SHE JUST, I MEAN, SHE’LL CRY. SHE’LL START BITING HERSELF. SHE SEEMS AGITATED. SHE’S HAD SOMEINCREASED PAIN. I USED EXTRA MORPHINE. DID USE THE INHALED
MORPHINE, TOO, TO KIND OF RELAX
HER AIRWAY? YEAH. IT’S ABOUT IMPECCABLE
ASSESSMENT AND MANAGEMENT OF SYMPTOMS SO THAT PAIN AND
SUFFERING IS TREATED IN THE MOST UP-TO-DATE,
EVIDENCE-BASED WAY THAT WE HAVE AVAILABLE. I MEAN, DEFINITELY WE’RE
A PHONE CALL OR A VISIT AWAY. SO WE, YOU KNOW,
IF YOU CALL US, WE CAN TELL YOU WHAT TO DO
TO MANAGE HER SYMPTOMS, AND TALK YOU THROUGH IT
ON THE PHONE, AND COME OUT IF WE NEED TO. ANYTHING ELSE,PAIN MANAGEMENT WISE,THAT WE DIDN’T TALK ABOUTTHAT COULD BE IMPORTANTFOR FAMILIES TO KNOW? IF YOU HAVE A CHILD
THAT’S REALLY SICK, THE BEST THING IS TO DO
THE PAIN MANAGEMENT, AND ALLOW FORTHE MEDICATIONSBECAUSE THE KIDS GOTHROUGH ENOUGH. MORE THAN LIKELY, IF THEIR
LIVES ARE GOING TO BE SHORT, THEY NEED THAT MEDICATION TO
HELP THEM ENJOY THEMSELVES, AND ENJOY THEIR FAMILIES, INSTEAD OF CONSTANTLY
BEING, HURTING, SO I THINK IT’S IMPORTANT. [Vianett Perez speaking Spanish] WHEN A CHILD IS BORN INTO A FAMILY WITH A DISABILITY OR CHRONIC OR COMPLEX ILLNESS, IT DOESN’T JUST HAPPEN TO THE CHILD, AND IT DOESN’T JUST
HAPPEN TO THE PARENTS – IT ALSO HAPPENSTO THE SIBLINGS,WHICH WE OFTEN CALLTHE INVISIBLE CHILD.AND THEY KIND OF GET LOSTIN THE SHUFFLE. MY ROLE IS TO TRADITIONALLY SUPPORT THE SIBLINGS, TO PREPARE THEM FOR WHAT’S TO COME IN THE FUTURE OF THEIR SIBLING’S CHRONIC ILLNESS. I WORRY THAT MY MOM
AND DAD ARE SAD. SOMETIMES I EVEN WORRY THATMOLLY WILL NEVER COME HOME.DO YOU EVER THINK THAT WHENKASSIE GOES TO THE HOSPITAL, THAT SOMETIMES SHE MIGHT NOT
COME BACK HOME? YEAH. YEAH. SO HOW ELSE IS KASSIEDIFFERENT FROMJASON AND DYLAN? WHEN SHE IS SEVENTY
YEARS OLD. WHEN SHE ISSEVENTY YEARS OLD,WHAT’S GOING TOHAPPEN WHEN SHE’SSEVENTY YEARS OLD? SHE WILL JUST
STAY LIKE A GIRL. YOU THINK SHE’S GOING TOALWAYS STAY LIKE A GIRL? YEAH. [Vianett Perez speaking Spanish] I THINK THAT’S ALSO
A PART OF MY ROLE IS HELPING THEM FIND
A NEW NORMAL. FIRST YOU HAVE TO
ADDRESS WHAT WAS LOST. I DON’T LIKE THE FACT THATMOM AND DAD AREN’T RIGHT ATMY BECK AND CALLLIKE THEY USED TO BE.I DON’T LIKE THE FACT THATNOW WE HAVE TO SPEND SOMUCH TIME AWAY GOING TOHOSPITALS AND DOCTOR VISITS, BUT FINDING A NEW NORMAL
FOR THE SIBLINGS WOULD BE SOMETHING AS SIMPLE AS FINDING ACTIVITIESFOR THEM TO DO,WAYS THAT THEY CANHELP FEEL A PARTOF THAT CIRCUMSTANCE,FEEL A PART OFTHEIR SIBLING’S CARE. SHOW KASSIE. SHOW HER IN
HER WHEELCHAIR. THERE YOU GO. SEE? LOOK, YOU’RE HERE. I THINK SHE LIKES IT.SHE’S SMILING. YEP. OH, GOOD JOB. THE BOYS ARE PRETTY GOOD. THE BOYS UNDERSTAND. THEY’LL COME UP ANDCUDDLE NEXT TO HERIN BED AT NIGHTIN HER ROOM.THEY LOVE THEIR SISTER.SINCE TYLER’S ORIGINALDIAGNOSIS AND BRAIN SURGERY,HE HAS BEEN ADMITTED TOTHE HOSPITAL DOZENS OF TIMESRELATED TO HIS BRAIN TUMORAND A COMPLEX WEB OFINTERRELATED COMPLICATIONS. (Cara Beatty) WE ARE UNDER PALLIATIVE CARE
BECAUSE TYLER IS COMPLEX, AND I THINK THE HARD THING IS,
IT’S NOT ALWAYS WHAT IT IS. LIKE, TYLER KIND OF WRITES
HIS OWN BOOK AND I THINK THAT THAT’S A LOT OF TIMES HOW CHILDREN
OF PALLIATIVE CARE ARE. IT’S NOT BY THE BOOK. THEY’VE WRITTEN
THEIR OWN BOOK. HIS PROBLEM LIST WAS PROBABLY A PAGE LONG. HIS MEDICATION LIST WAS TWO PAGES LONG, IF NOT MORE. AND A LOT OF PROVIDERS WERE VERY AFRAID OF
TAKING CARE OF HIM. CHILDREN AND FAMILIES
ARE BOUNCING AMONG MANY SITES OF CARE. THEIR HOMECARE PROVIDERS ARECOMING TO THEM IN THEIR HOMES,THEY GO TO THEIR PRIMARY CAREPROVIDERS IN THEIR COMMUNITY.THEY GO TO TWELVE, THIRTEEN,TWENTY SUBSPECIALISTS FOR EVERY LITTLE SYMPTOM OR
DISEASE ISSUE THEY HAVE. THEY ARE IN AND OUT
OF THE HOSPITAL, IN AND OUT OF
THE EMERGENCY ROOM, SO THAT’S WHAT
FRAGMENTATION IS, IS THAT KIND OF PIECEMEAL CARE THAT OCCURS IN ALL OF THOSE DIFFERENT SITES. WHEN THAT HAPPENS IT BECOMES THE RESPONSIBILITY OF
THE FAMILY TO BE THE COHESION, TO BE THE GLUE THAT
REMEMBERS EVERYTHING THAT HAS GONE ON
WITH THEIR CHILD, THAT CAN COMMUNICATE
WHAT HAPPENED FROM THIS VISIT TO THAT VISIT, TO THIS SUBSPECIALIST
TO THAT SUBSPECIALIST. SO FAMILIES VERY QUICKLY
TURN INTO BEING THEIR CHILD’S FULL-TIME
CASE MANAGER. THE PROCEDURE THAT PALLIATIVE CARE DOES IS CONVERSATION AND COMMUNICATION. AND REALLY, THE SYSTEM OF
PEDIATRIC PALLIATIVE CARE AND THE MEDICAL HOME MODEL
IS DESIGNED TO BRIDGE THOSE TRANSITION
POINTS OF ENTRY. IF YOU LOOK AT WHERE A CHILD
ENTERS A HEALTHCARE SYSTEM, HOW CAN WE COALESCE
THAT INFORMATION? SO IT’S BRIDGING,
IT’S COMMUNICATION, AND IT’S DOING THAT IN
A WAY THAT THE FAMILY DOESN’T FEEL RESPONSIBLE
FOR THE DETAILS. THEY HAVE ENOUGH TO
WORRY ABOUT. THEY FIGHT AS
HARD AS WE DO AND I JUST REALLY FELT,
AS SICK AS HE WAS, THEY NEVER GAVE UP ON TYLER. THEY, THEY SAW WHO HE WAS
AND WHO HE COULD BE AND WITH DIGNITY
AND RESPECT, THEY FOUGHT FOR HIM JUST AS MUCH AS
CHRIS AND I WOULD, AND THEY HELPED US GET TOA POINT WHERE WE ARE TODAY. READY, CATCH IT. GOOD JOB! OOO! (Catherine Kelly-Langen)HE HAS BEEN AMAZING.HE’S BEEN PROGRESSIVELYIMPROVING THROUGH THERAPY.HE’S BEEN BACK AT SCHOOL INTOA REGULAR CLASSROOM.TALKS…GOT YELLED AT AT SCHOOLFOR TALKING TOO MUCH. I SAID THAT TO SOMEONE AND THEY SAID, I DIDN’T EVEN
KNOW HE TALKED, YOU KNOW. YES, HE TALKS TOO MUCH
APPARENTLY. AND YOU KNOW, GOING TO
CHURCH AND STANDING UP IN THE MIDDLE OF CHURCH
SAYING, AMEN! (Cara Beatty) I WHOLEHEARTEDLY BELIEVE THATWITHOUT THEM IN TYLER’S CAREOUR STORY WOULD BEDETRIMENTALLY DIFFERENT. I JUST ALMOST,
WHEN I SEE DR. FRIEBERT, I ALWAYS JUST GIVE HER
A HUG BECAUSE… SHE LITERALLY SAVED
TYLER’S LIFE. HER AND THE WHOLE TEAM. LARRY HICKMAN AND HIS EX-WIFEKARI HAVE THREE DAUGHTERS,KAYLA, KRISTA, AND KENDRA;AND THREE SONS, GRANT,GARRETT, AND KENT.ALL THREE OF THE BOYS WEREDIAGNOSED WITH A RARE DISORDERCALLED SANFILIPPO SYNDROME.AT BIRTH THE CHILDAPPEARS NORMAL,AND THEN SLOWLY ACQUIRESDEVELOPMENTAL DISABILITIES.AS THE DISEASE PROGRESSES,THE CHILD DEVELOPS MOREBEHAVIORAL PROBLEMS,INCLUDING HYPERACTIVITY,DESTRUCTIVE ANDAGGRESSIVE BEHAVIOR,AND SLEEP DISTURBANCE,PRESENTING SIGNIFICANTCHALLENGES TO CAREGIVERS.IN THE FINAL PHASEOF THE DISEASE,THE CHILD BECOMESINCREASINGLY IMMOBILEAND UNRESPONSIVE,DEVELOPS SEIZURES,AND HAS DIFFICULTYSWALLOWING.THERE IS NO CURE AND CHILDRENWITH SANFILIPPO SYNDROMETYPICALLY DO NOT LIVEBEYOND THEIR TEENAGE YEARS.THE HICKMANS CARED FOR THESETHREE BOYS ON THEIR OWNUNTIL LARRY AND HIS WIFE KARIGOT DIVORCED SEVERAL YEARS AGO. MY WIFE AND I ARE NO LONGER MARRIED. I HOLD NO JUDGMENT ON THAT BECAUSE MY WIFE WAS
A WONDERFUL MOTHER, AND WHILE I WORKED
AT SCHOOL AS AN ADMINISTRATOR
IN EDUCATION, SHE CARED FOR
THE FAMILY AT HOME. BUT SHE HAD SEVENTEEN, SIXTEEN YEARS WITH
GRANT AT HOME, AND THEN I WOULD COME
HOME AT NIGHT AND, I’LL BE HONEST, THE TIME
I WAS AT HOME WAS ROUGH, SO I DON’T KNOW HOW SHE DID
TWENTY-FOUR HOURS. AND WE LACKED SERVICES,
WE LACKED CARE AT THAT TIME, SO SHE WAS DOING
MOST OF IT HERSELF. THE PALLIATIVE CARE TEAMBECAME INVOLVED AT A TIMEWHEN LARRY WAS STRUGGLING TOHANDLE THE PRESSURES OF WORKAND CARING FOR HIS CHILDRENON HIS OWN. I WORK A LOT WITH BUILDING A RELATIONSHIP WITH A CHILD AND FAMILY AND ASSESSING WHAT THEY NEED, AND COMING UP KIND OF WITH A PLAN, ESPECIALLY A NEW PATIENT, ON HOW WE CAN HELP. THE PALLIATIVE CARE TEAM ATAKRON CHILDREN’S HOSPITALWILL DO ALMOST ANYTHING TOMAKE THE LIVES OF A PATIENTAND FAMILY EASIER.IN THE CASE OFTHE HICKMAN FAMILYTHE TEAM PROVIDED SUBSPECIALTYMEDICAL EXPERTISE,ASSUMED THE ROLE OFCARE COORDINATION,AND HELPED THE HICKMANSGAIN ACCESS TOPHYSICAL THERAPY ANDTHE APPROPRIATEADAPTIVE EQUIPMENTFOR THE THREE BOYS. MY PASSION IS TO HELP PEOPLE BREAK THROUGH THE SYSTEM AND BARRIERS AND TO BE ABLE TO LIVE LIFE
WITHOUT ALL THESE OTHER CUMBERSOME THINGS
THAT YOU DIDN’T SIGN UP FOR. THE TEAM ALSO HELPEDTHE HICKMANS GAIN ACCESSTO LEGAL SERVICES TOPETITION THE STATEFOR ADDITIONALNURSING HOURS,WHICH THEY DESPERATELYNEEDED. BETWEEN DENISE AND
THE PALLIATIVE CARE TEAM THEY WERE ABLE TO
WORK WITH ME TO SAY THE RIGHT THINGS AND
WRITE THE RIGHT THINGS IN ORDER TO GET ADDITIONAL
STATE SERVICES FOR THE BOYS. AND THAT TOOK THE REALM OF
AN APPEAL PROCESS AND WE TESTIFIED IN THE APPEAL
PROCESS AS A TEAM, ME AND DR. FRIEBERT, AND EVENTUALLY
THE CASE WAS WON. WE’LL GET IN THERE
IN THE TRENCHES WITH THE FAMILIES. ♪ I THINK IT WAS JUST
THE ASSURANCE OF KNOWING THAT HERSELF OR SOMEONE ELSE WAS
ALWAYS JUST A PHONE CALL AWAY. WE’D BE AT THE HOUSE AND HAVE
A CONCERN AND WE’D CALL. WE MIGHT NEED TO HAVE
HER MEDS CHANGED. THEY’D BE ABLE TO CALL
IN A PRESCRIPTION. THEY’D COME OUT AND THEY DO
CHECKUPS, AND CHECK INS. ENDLESS PHONE CALLS
TO THEM ALL THE TIME FOR PROBABLY TWO YEARS. [speaking Spanish] MORGAN ALSO HAD JUST A HOST OF HEALTHCAREPROFESSIONALS.SHE HAD TO HAVERESPIRATORY THERAPISTS.SHE HAD TO SEETHE PULMONOLOGIST.SHE HAD TO SEETHE NEUROLOGIST,PHYSICAL THERAPIST,OCCUPATIONAL THERAPIST.SHE DID AQUATIC THERAPY SO WE WERE WORKING WITH
A LOT OF DIFFERENT PEOPLE WHERE PALLIATIVE CARE
WAS OUR HOME BASE AND THAT’S HOW WE CONNECTED EVERYBODY. EVERYONE WAS ABLE TO GET THE SAME INFORMATION BECAUSE PALLIATIVE CARE WAS DOING THAT FOR US. BECAUSE ANY ONE SPECIALIST MAY BE PHENOMENAL BUT THEY ARE REALLY PAYING ATTENTION TO THE HEART. THEY ARE REALLY PAYING ATTENTION TO THE LUNGS, OR THE PAIN, AND THEY LITERALLY ARE
NOT LOOKING AT THE WHOLE PERSON OR
THE WHOLE SYSTEM. THEY REALLY COULD LOOK OUTSIDE OF THE BOX AND SEE HIM AS A PERSON AND NOT JUST AS A DIAGNOSIS. (Sarah Friebert, MD)THEY ARE HAVING CONVERSATIONSWITH THEIR SPIRITUALCARE PROVIDERS.THE CHILD LIFE SPECIALISTIS ELICITING SOME OF WHATTHE CHILD’S VISION ISOF HIS OR HER LIFE.THE HOME CARE NURSE ISHEARING OR SEEING THINGS.THE SOCIAL WORKER ISPICKING UP ON THINGS, AND WE’RE PUTTING
THAT ALL INTO THAT TRANSDISCIPLINARY
SOUP IN A WAY THAT GETS MISSED WHENTHE DECISIONS ARE MADEONLY BASED ON WHAT HAPPENS INA TEN MINUTE OFFICE VISITOR AN ACUTE-CARE STAYIN THE PICUWHEN THE CHILD IS ATHER WORST, AS OPPOSED TO CALM
DECISION-MAKING OR CONVERSATION ON AN ONGOING
BASIS OVER A LONG TERM WHERE YOU ARE REALLY ASSESSING
THE WHOLE NEEDS OF THE FAMILY. AND I THINK THAT’S WHAT
PALLIATIVE CARE BRINGS. PALLIATIVE CARE ENCOMPASSESALL OF THE DOMAINS OF CARETHAT RELIEVE SUFFERING FORTHE WHOLE PERSON AND FAMILY,AND AN INTEGRAL PART OFTHE ILLNESS JOURNEYCENTERS AROUNDTHE SPIRITUAL DOMAINTHROUGH WHICHFAMILIES FIND MEANING,CREATE LEGACY,AND DEVELOP A RELATIONSHIPWITH THE TRANSCENDENT. SERVING AS CHAPLAIN ON THE PEDIATRIC PALLIATIVE CARE TEAM IS A WONDERFUL PRIVILEGE BECAUSE I GET TO SIT WITH
PATIENTS AND FAMILIES AND I GET TO ENGAGE THEM
IN TALKING ABOUT WHAT BRINGS THEIR LIFE
MEANING AND PURPOSE. KAREN’S BEEN VERY SWEET. I’VE HAD HER IN THERE
A COUPLE OF TIMES WHEN KASSIE’S BEEN VERY SICK
AND PRAYING WITH HER HAS MADE ME FEEL REALLY,
UHM, FULFILLED. I ALWAYS BELIEVED IN GOD
BEFORE BUT WITH KASSIE, MY FAITH HAS DEFINITELY
GOTTEN A LOT STRONGER. I TALK TO GOD A LOT ANDI ALWAYS LIKE TO HAVE THATSECOND PERSON THERE, YOU KNOW,JUST MAYBE TALK TO, LIKE,WHAT’S HEAVEN LIKE,OR WHAT WOULD HAPPENIF SHE WOULD PASS?WHAT WOULD THINGSBE LIKE FOR HER? YOU KNOW, JUST THE LITTLE,
MAYBE SOMETHING THAT WOULD BE STUPID TO SOMEBODY
ELSE BUT IS VERY BIG TO ME. GRANT HICKMAN, THE OLDESTOF THE THREE BOYS,DIED RECENTLY AT THE AGEOF NINETEEN.THE PALLIATIVE CARE TEAMHELPED THE HICKMANS WITHDIFFICULT DECISIONSAT THE END OF LIFE. MY OLDEST SON
PASSED IN DECEMBER AND WE HAD MIXED VIEWS WITHIN THE FAMILY AS FAR AS WHAT WE SHOULD DO PRIOR TO THAT, THE COUPLE WEEKS LEADING UP TO HIS DEATH, AND WE HAD A LOT OF ETHICAL ISSUES THAT WE WERE STRUGGLING WITH. BOTH DENISE THE SOCIAL WORKER
AND DR. FRIEBERT CAME TO OUR HOUSE
SEVERAL TIMES AND I REMEMBER THEM
COMING IN JEANS AND I REMEMBER THEM SITTING
DOWN IN OUR LIVING ROOM AND I THINK THE STYLE OF
CONCERN AND LEADERSHIP THAT THEY GAVE US WAS
SO IMPORTANT BECAUSE WE DIDN’T
KNOW WHAT TO DO. WE HAD NEVER WENT THROUGH
THE DEATH AND DYING PROCESS, UHM, AND WE WANTED TO
HOLD ON BUT WE DIDN’T, WE DIDN’T KNOW WHAT
WAS BEST FOR GRANT. AND THEY,
WITHOUT ANY JUDGMENT OR WITHOUT ANY REAL
DIRECT DIRECTNESS, THEY WALKED US THROUGH
ALL THE CHOICES AND THEY ALLOWED US TO MAKE THOSE
CHOICES WITH DIGNITY FOR GRANT AND TO THIS DAY, I JUST APPRECIATE THE WAY
THEY WORKED WITH US. (Sarah Friebert, MD) OUR CHALLENGE ASA PALLIATIVE CARE TEAMWAS FIRST AND FOREMOST TOFIGURE OUT WHAT WAS INGRANT’S BEST INTERESTAND SUPPORT THAT,AND SECONDLY, TO FINDA WAY THAT ALL SEVENOF THESE PEOPLE WOULD BEABLE TO CONTINUE TO LIVEAFTER GRANT DIED, AND FEELOKAY ABOUT WHAT HAPPENED.IF THIS ISN’T HANDLED WELLYOU’VE GOT SEVEN LIVES THATWILL BE FOREVER CHANGED. NOW, THEY’RE GOING TO BE
FOREVER CHANGED ANYWAY, NO QUESTION, BUT IF YOU’RE LEFT
WITH RESIDUAL GUILT OR ANGER OR CONFUSION OR WHATEVER, IT JUST MAKES IT THEN
THAT MANY TIMES WORSE. SO OUR CHARGE,
IF YOU WILL, WAS TO TRY TOMEDIATE A SOLUTIONTHAT PRESERVEDGRANT’S DIGNITY AND QUALITY OF LIFE TO
THE BEST OF OUR ABILITY AND REALLY WAS IN
HIS BEST INTEREST, BUT ALSO ALLOWED EACH OF
THOSE FAMILY MEMBERS TO GET THERE IN THE WAY
THAT THEY COULD. THEY WERE ABLE TO ALMOST
NEGOTIATE THE FAMILY DECISIONS INTO A GROUP CONSENSUS THAT
EVERYBODY COULD LIVE WITH. WE STILL, SIX MONTHS LATER,
ARE VERY COMFORTABLE WITH THE WAY WE WERE COUNSELED
AND THE WAY IT ENDED UP. WHEN SHAUNIE HOPFE GAVE BIRTHTO HER SON NOAHSHE WAS A SINGLE MOTHEROF TWO DAUGHTERSNAMED JOI AND TRINIDIAND A SON NAMED NIKO.NOAH WAS BORN WITH A RAREFORM OF TRISOMY 13,A GENETIC DISORDER THATCAUSED HIM TO HAVE NUMEROUSMEDICAL PROBLEMS ANDPHYSICAL DEFORMITIES.HE HAD APNEIC EVENTS WHEREHE WOULD STOP BREATHINGAND TURN BLUE AND OFTENNEEDED RESUSCITATION.HE DIED IN THE HOSPITALAT SIX MONTHS OF AGEAFTER ONE OF THESE EPISODES. THE TWO TIMES WHEN HE STOPPED BREATHING I CRIED AND I TOLD HIM DON’T LEAVE ME AND HE WOULD START TO BREATHE AGAIN BUT SLOWER, AND THEY TOLD ME THAT
HE’S JUST WAITING FOR ME TO LET HIM GO, SO THAT THIRD TIME
I DIDN’T ASK HIM AND I JUST CRIED
AND HOLD HIM AND WAS ROCKING HIM AND
HE DIDN’T COME BACK ON. AND I FELT HIM STOP
BREATHING FIRST, AND THEN I FELT
HIS HEART STOP. AND THEN THE DOCTOR SAID
THAT HE WAS GONE. AND AT THAT POINT LIKE, NOBODY COULD GIVE ME
ANYTHING UNLESS IT WAS
GIVING ME NOAH BACK. YOU KNOW, BUT THEY MADE SURE
THAT DURING HIS LAST MOMENTS I HAD EVERYTHING I NEEDED
TO BE COMFORTABLE AND THAT HE HAD
EVERYTHING HE NEEDED. IT’S A HUGE PRIVILEGE TO BE ABLE TO, UHM, TO BE PART OF ANY CHILD’S END-OF-LIFE
THAT I’M WITNESS TO. IT IS AN AMAZINGLY EMOTIONAL
AND SPIRITUAL AND PASSIONATE MOMENT THATSOMETIMES IS AWFUL BUT IT’S HAPPENING, WE CAN’T DO ANYTHING
ABOUT IT HAPPENING SO WE MAY AS WELL BE THERE AND RECOGNIZE THE PRIVILEGE
FOR WHAT IT IS. IT’S A PASSAGE. I LOOKED IN MORGAN’S EYES… AND I SAID, THANK YOU, MORGAN, AND I RUBBED HER HAND
ON MY FACE, AND I KISSED HER. AND I SAID, I LOVE YOU SO MUCH,
YOU’RE SO BEAUTIFUL. AND YOU TEACH MOMMY SO MUCH,
AND I THANK YOU. YOU ARE THE BEST THING
IN THE WHOLE WORLD. AND I JUST KEPT SAYING,
I LOVE YOU SO MUCH. IT WAS A WONDERFUL EXPERIENCE
OF THE WHOLE FAMILY BEING TOGETHER AND
WATCHING HIM DIE PEACEFULLY, AND PALLIATIVE CARE
ALLOWING THE WHOLE PROCESS TO BE DONE WITH GREAT DIGNITY, ALLOWING US TO ALLEXPERIENCE DEATHIN A WONDERFUL WAY.I REMEMBER, WE’RE VERY,UHM, SPIRITUAL, AND IN HIS LAST DAYS, YOU KNOW,
WE SANG AND WE WORSHIPPED AND WE PRAISED, AND WE WATCHED HIMGO QUIETLY.AND I DON’T BELIEVEHE HAD ANY PAIN.I JUST BELIEVE HE JUSTWENT WITH PEACE.THE DEATH OF A CHILD DOES NOTEND THE FAMILY’S RELATIONSHIPWITH PALLIATIVE CARE.THEY HAVE ONLY COMPLETED PARTOF THE JOURNEY,AND AS THEY GO THROUGHTHEIR GRIEVING PROCESS,BEREAVEMENT SPECIALISTSARE AVAILABLE TO COUNSELTHE SURVIVING LOVED ONESTHROUGHONE-ON-ONE INTERACTIONAND VARIOUS PROGRAMSORGANIZED FOR INDIVIDUALS WHOHAVE EXPERIENCED A LOSS.ONE SUCH EXAMPLE ISTHE GOOD MORNING PROGRAM,A GRIEF GROUP FOR CHILDRENAND TEENAGERS WHO ARECOPING WITH THE LOSSOF A LOVED ONE,BE IT A PARENT, GRANDPARENT,SIBLING OR ANYONE ELSEWHO PLAYED A SPECIAL ROLEIN THEIR LIFE. WELCOME TO SAND TRAY PLAY. TONIGHT I’M GOING TO ASK YOUTO BUILD YOUR WORLD.AND WHEN YOU’RE READYTAKE YOUR HEART-SHAPED BOXAND NOTICE THE MINIATURESALL AROUND THE ROOM.AND YOUR HEART’S GOING TORESONATE TO SOME OF THOSEMINIATURES, EITHERPOSITIVELY OR NEGATIVELY,AND THOSE ARE THE ONESYOU WILL PUT IN YOUR BOX.LET YOUR HEART CHOOSETHE MINIATURES THATYOU WILL USE TOBUILD YOUR WORLD.AND SINCE WE’RE MISSING SOMEONESPECIAL IN OUR LIVES,I’M GOING TO ASK THAT AS YOUBUILD YOUR WORLD TONIGHT,YOU INCLUDE YOUR SPECIALPERSON IN YOUR WORLD,AND JUST LETTHE WORLD EMERGEFROM YOUR HEARTWITHOUT THINKING. (girl)THIS IS MY BIG BROTHER.THIS IS HIS FAVORITE ANIMAL. (Carol Stanley)THAT’S HIS FAVORITE ANIMAL. (girl)YEAH, AND I PUT THE CLOWNBECAUSE HE WAS A BIG JOKESTER.HE ALWAYS PULLED PRANKSAND CRACKED JOKES.THIS REPRESENTS THE PAIN THATI FELT WHEN HE PASSED AWAY.I REMEMBER THE TIMEBECAUSE THERE’S NOTA LOT OF TIMEWHEN SOMEBODY’S DYING,SO I PUT THAT THERE.AND I PUT THE BLACK HEARTBECAUSE THAT’S HOW MY HEART FEELS. YOUR HEART FEELS BLACK. UH-HMM. WE KNOW IT DOESN’T END JUST WITH THE DEATH OF THE CHILD, IT’S GOING TO BE A FABRIC OF THEIR LIFE FOR THE REST OF THEIR LIVES, SO WE PARTICULARLY TRY TO
FOCUS ON THAT FIRST YEAR, YEAR AND A HALF AFTER THEY DIE TO KEEP IN CLOSE
CONTACT WITH THEM. PHONE CALLS, E-MAILS, DIFFERENT PROGRAMS THAT
WE OFFER ARE AVAILABLE. THEY ASKED ME, YOU KNOW, HOW IS IT GOING, YOU KNOW, HOW AM I DEALING WITH IT? AND I EXPRESSED TO THEM
THAT THE KIDS WAS ONE OF MY MAIN CONCERNSAND THEY JUMPED RIGHT IN.SAID, THIS IS THE PROGRAMSWE HAVE, YOU KNOW,WE CAN SIGN THEM UP.THAT WAS A VERY GOOD THING,ESPECIALLY, AT SCHOOL,THE KIDS BECAME,HEY, THAT’S THE GIRL WITHTHE BROTHER THAT DIED. BUT IN THIS PROGRAM
THEY HAD OTHER PEOPLE, OTHER LITTLE PEOPLE THAT
WAS DEALING WITH THE SAME THINGS THEY WAS, SO THEN THEY FELT LIKE
THEY’RE NOT ALONE. THEY HAD THE KIDSDRAW PICTURES TOEXPRESS THEIR EMOTIONS.A LOT OF TIMES LITTLE KIDS,THEY CAN’T,THEY DON’T KNOWWHAT WORDS TO USE. AND WHAT WE FIND IS THAT PEOPLE
THAT CAN EXPRESS THESE THINGS AND FIND HEALTHY WAYS TO
EXPRESS THESE FEELINGS AND REACTIONS ARE GOING TO BE MORE
HEALTHY OVER THE LONG RUN. (Shaunie Hopfe)NIKO, HE’S STILL,HE HAS DREAMS ABOUT NOAH. UHM, ONE NIGHT
HE WAS LAUGHING BUT I THOUGHT HE WAS CRYING, LIKE UNCONTROLLABLY
CRYING, LIKE SOBBING, BUT THEN I SAID, NIKO, NIKO. I SHOOK HIM AND WOKE HIM UP
AND I NOTICED HE WAS LAUGHING, AND HE SAID, MOMMY, STOP,I’M PLAYING WITH NOAH.AND THAT REALLY SHOCKED ME.THAT REALLY SHOCKED MEBECAUSE THAT WAS NOT AT ALLWHAT I EXPECTED, BUT IT’S STILL COMFORTING,
YOU KNOW, AND TO KNOW THAT EVEN THOUGH NOAH’S PASSED, NIKO IS STILL HAVING
A RELATIONSHIP WITH HIM. I THINK WHEN YOU HAVE
A FAMILY THAT’S GRIEVING YOU WANT TO BE AS OPEN AS
POSSIBLE TO REALIZING THAT THERE’S GOING TO BE
REACTIONS OF ALL TYPES AND YOU DON’T WANT TO
HAVE IN YOUR MIND ANY KIND OF PRECONCEIVED
NOTION OF WHAT IT SHOULD LOOK LIKE, BECAUSE IT’S NOT
GOING TO LOOK LIKE THAT. IT’S GOING TO BE UNIQUE
FOR THAT FAMILY. PEOPLE WHO ARE EXPERIENCED
WITH GRIEF, THEY KIND OF, THEY HAVE SOMETHING DIFFERENT
TO BRING THAN PEOPLE WHO LOVE YOU, BECAUSE
PEOPLE WHO LOVE YOU ALSO DON’T WANT TO HURT YOU. I THINK BEREAVEMENT SPECIALISTSAREN’T AFRAID OF GRIEF.THEY DON’T TIPTOE AROUND.WHEN THEY ASK YOUHOW YOU’RE DOING,THEY MEAN HOW ARE YOU INTHE GRIEVING PROCESS?AND THEY ASK THE RIGHTPOINTED QUESTIONS.I’M ALWAYS FREE TO REMEMBERMORGAN AND FREE TOTALK ABOUT HER AND PART OF MY,MY GRIEVING PROCESS IS,WHEN PEOPLE ASK HOWMANY KIDS I HAVE, AND I ALWAYS SAY,
WELL, I HAVE TWO, AND I MAKE SURE TO SAY
BUT MORGAN DIED AND PEOPLE ARE ALWAYS AFRAID OR THEY FEEL BAD THAT
THEY ASKED ME THAT, BUT I LOVE IT BECAUSE
IT’S LIKE I STILL GET TO HAVE HER WITH ME. IT’S JUST A WAY OF
REMEMBERING HER, TO TELL PEOPLE HER STORY. IN PALLIATIVE CARE AS THE AMERICAN ACADEMY
OF PEDIATRICS SAYS, WE FOCUS ON ADDING LIFE
TO THE CHILD’S YEARS, NOT JUST ADDING YEARS
TO THE CHILD’S LIFE. YOU KNOW, THINGS CAN
ALWAYS HAPPEN AND THAT IS ONE OF THE THINGS
THAT DR. FRIEBERT AND THE TEAM REALLY FOCUS ON, LIKE, YOU COULD GO OUT AND GET
KILLED IN A CRAZY ACCIDENT BUT WOULD YOU NOT LIVE LIFE BECAUSE
YOU “MIGHT”? AND THAT’S REALLY
HELPED US WHEN WE WERE STRUGGLING THROUGH
THE REALLY HARD TIMES TO REALLY EMBRACEWHO TYLER ISAND WHERE WE ARE NOW. (Shaunie Hopfe) I DIDN’T WANT WHATEVER TIMENOAH HADTO BE FILLED WITH SADNESS.I JUST WANTED HIM TOHAVE A HAPPY LIFEHOWEVER LONG ITWAS GOING TO BE.I MEAN, I REALLY VALUEDTHE TIME WITH NOAH.PALLIATIVE CARE TOOK AWAYA LOT OF THE STRESSOUT OF THE SITUATION AND DAY ONE,
THAT’S WHAT THEY TOLD ME, WE DON’T WANT YOU TO
STRESS ABOUT IT. WE JUST WANT YOU TO ENJOY
THE TIME WITH HIM. THEY ARE NOT HERE
BY ACCIDENT. THEY GOT HERE FOR A REASON. AND THEY ARE HERE
TO DO SOMETHING, AND IT IS SOMETIMES
ACCOMPLISHED IN MINUTES AND SOMETIMES
ACCOMPLISHED IN DAYS. BUT THOSE DAYS ARE AS
SACRED TO THOSE PARENTS AS THE YEARS ARE TO
ANY OTHER PARENT. I BELIEVE THAT THINGS
HAPPEN FOR A REASON. WE DON’T KNOW WHY, BUT I THINK SHE HIT IT
ON THE MARK WHEN SHE SAID
HE’S TOUCHING SO MANY LIVES. (Cara Beatty)HE HAS TAUGHT ME SO MUCH,AND AS A PARENT, IT REALLYSPEAKS TO YOUR HEART WHEN PEOPLE COME UP
TO YOU AND SAY, YOUR SON HAS TAUGHT MESO MUCH.I’M SO GRATEFUL THATI GOT TO MEET HIM. MY LIFE HAS BEEN ENRICHED BECAUSE SHE GIVES ME
UNCONDITIONAL LOVE. SHE IS ONE OF
THE BEST CUDDLERS. SHE, SHE LOVES YOU,
NO MATTER WHAT. (Larry Hickman) THE THINGS THAT YOU WOULDSTRIVE FOR NORMALLYIN MATERIALISM OR TRYINGTO GAIN POWER OR POSITIONOR WHATEVER, JUST REALLYKIND OF GO AWAY.THEY’RE NOT THATSIGNIFICANT IN LIFE,AND I THINK THAT IT’S MOREABOUT LIVING LIFETO ITS FULLEST ANDLIVING LIFE FOR OTHER PEOPLEAND CHERISHING THE MOMENTBECAUSE THE MOMENT WON’T LAST. WELL, I’VE LEARNED THAT,
DON’T LET LIFE GET YOU DOWN, AND LIVE LIFE TO THE FULLEST. [giggling] [Vianett Perez speaking Spanish] [Salvador Perez] [speaking Spanish] [Vianett Perez speaking Spanish] BECAUSE OF WHAT WE’VE
GONE THROUGH WITH MORGAN OUR PERSPECTIVE ON
LIFE HAS CHANGED. (DeNica Bishop) GOING THROUGH THIS PROCESSWITH MORGAN,IT WAS LIKE, WATER STARTEDTO TASTE BETTER,AIR STARTED TOSMELL BETTER.IT WAS LIKE A BRAND-NEWCLARITY ON LIFE AND THINGS THAT WERE, THEY USED TO
SEEM SO BIG TO ME WERE NOW SMALL
IN COMPARISON. YOU CAN’T GET THAT
FROM ANYWHERE ELSE. YOU CAN’T READ IT
IN A BOOK. YOU CAN’T DREAM IT UP. YOU CAN ONLY GO THROUGH IT. THERE’S SO MUCH THAT YOU GAIN. THERE’S A FIGHT IN YOUR SPIRIT
THAT YOU GAIN THAT SAYS, NO MATTER WHAT WE FACE, WE HAVE A RESOLVE THAT SAYSWE’RE GOING TO GET THROUGH IT.AND IT WOULDN’T HAVE BEEN THEREIF MORGAN HADN’T,HADN’T SHOWN US. ♪ ♪ ♪ ♪